Mind Body EDS attends and sponsors its first Ehlers-Danlos Society Global Learning Conference in Nashville, TN

What an incredible opportunity Mind Body EDS had to participate and sponsor in this years Ehlers-Danlos Society Global Learning Conference in Nashville, Tennessee, USA!

We had two representatives go on behalf of our charity (our Founder and a Volunteer) to raise awareness of our charity’s mission, network with worldwide specialists and patients, as well as be educated with the most up-to-date findings of the Ehlers-Danlos syndromes. Mind Body EDS were the only UK registered charity who supported the event.

As a charity, we are very proud to have been able to support the The Ehlers-Danlos Society whilst being the only UK EDS charity in attendance. We learnt such an extensive amount of education in EDS, and participated in two different research studies looking into the genetic type for hEDS, and the affects of local anaesthesia on EDS patients.


We’d like to thank our volunteers, patients and specialists we connected with at the conference and hope to see y’all next year in Scottsdale, Arizona, USA.


#ehlersdanlossyndrome #eds#hypermobilitysyndrome #hsd #heds#veds #chronicillness #charity#donate #edsawareness #spoonie

Congratulations Alex for cycling from London to Amsterdam for Mind Body EDS!

On Sunday 22nd June 2019, Alexander McCormac arrived in Amsterdam completing his cycling journey from London riding over 604km over four days.

Alex said, “We did it! Amazing, exhausting experience but well worth it, and wrapped up with a beer on an Amsterdam canal before dinner with the team. Unforgettable.”

Thank you so much Alex for supporting our charity and thank you to everyone who showed their support on social media, by cheering him on and by donating! To date, he has raised £1,555 which is 77% of his fundraising goal! For anyone who still wants to donate and help us get to 100%, the link is here: https://uk.virginmoneygiving.com/AlexanderNororiMcCormac

Congratulations George for running the Vitality 10k for Mind Body EDS!

On bank holiday Monday, 27th May 2019, George Dodson completed the Vitality London 10k in 59 mins 9 seconds! Thank you so much to for running to support Mind Body EDS and to everyone who cheered on, donated, and supported George and our charity. We have raised 98% of the fundraising goal and would love to make it to 100% so for anyone who would like to donate and help us reach that goal, please donate here: https://uk.virginmoneygiving.com/GeorgeDodson

#MindBodyEDS #AGatewayofHope #Vitality10k

John helps fundraise over £20,000 by running the London Marathon 2019!

John Thompson running past Tower Bridge Cheer Point. Photographer  @agbwalker

John Thompson running past Tower Bridge Cheer Point. Photographer @agbwalker

Huge congratulations to our incredible London Marathon Charity Ballot runner, John Thompson for completing his first Virgin Giving Money London Marathon!

Being our first year apart of the London Marathon, we are so proud of him and his efforts and to date has fundraised over £20,000 for Mind Body EDS!

John was 2 minutes ahead of his goal time (3hr35) until he hit 32km. John suffered from excruciating spinal pain causing him to stop running. Luckily this was at our Limehouse Cheer Point where our strong 10 Mind Body EDS volunteers helped hydrate and provided support by giving him a pep talk to cheer him on. Eventually he got back into his stride, the searing pain alleviated and John finished in 4:04:35!

We are so grateful to our cheer point volunteers throughout the course helping spread awareness of our charity and most importantly, provide the moral support John needed to get him over the finish line.

Our Virgin Giving Money page is still active and we are continuing to receive donatioMns. If you’d like to show your support and make a real difference to EDS patients lives, please donate here: https://uk.virginmoneygiving.com/john-thompson-MindBodyEDS

Our warm-heart thanks to our sponsors (JHI Associates, Apex, and Peachey & Co LLP) , donors, cheer point volunteers, and volunteer photographers @agbwalker and Frankii Lock in helping make our first London Marathon an incredible success!

#MindBodyEDS #AGatewayofHope #ThanksaBillion #LondonMarathon2019

Southampton University Medics raise almost £1000 for Mind Body EDS

Thank you to Southampton University Medic Societies for helping fundraise for Mind Body EDS. We are so grateful as a charity for your continued support in helping us fulfill our mission of being a ‘gateway of hope’ for Ehlers-Danlos syndromes.

The Bluetits Southampton Medics Netball Club held a charity fancy dress netball match and raised a total of £212!

The MedSoc Monty held their annual dance show in April and Founder, Rochelle Sylvester, says:

It has been an absolute pleasure helping to fundraise for so many charities over the last few years, especially Mind Body EDS. I am so proud that we have managed to successfully promote body confidence whilst raising over £750 for Mind Body EDS.

If you would like to hold a fundraising event or partake in a fundraising race etc. please get in touch with our charity by emailing info@mindbodyeds.org.uk

Mind Body EDS Advocate at the 2019 National Undergraduate Neuroanatomy Competition

Mind Body EDS were invited to attend the 2019 National Undergraduate Neuroanatomy Competition at Southampton University on 23rd February 2019.

Our Founder, Laura Sylvester, presented Mind Body EDS Advocacy talk about our charity and spreading awareness of Ehlers-Danlos syndromes to over 250 medical students, professors and medical professionals from across the UK.

Many thanks for having us and helping us pursue our mission by helping to educate and advocate to medical students, the future doctors of our tomorrow.

USA champion running for Mind Body EDS in London Marathon 2019

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Every year, over 35,000 runners take part in this once-in-a-lifetime experience and we are excited to announce that Mind Body EDS secured a Charity Ballot place for the Virgin Money London Marathon 2019 - we know these are like gold dust! This year, London Marathon will be celebrating #ThanksaBillion breaking a fundraising record of £1 billion since it began in 1981!

John Thompson, 55, who is a Grand Slam gold medal champion at the Run Houston Race Series (winning all five races in record times), and winner of USATF Gulf Coast Region Grand Prix Series, will be running and fundraising for the charity this year. UK-born and with a PhD in Physics from Sussex University, he is now resident in the USA and works in the Oil & Gas industry. Out of office hours he has led an exceptionally energetic outdoor lifestyle and recently started running trail, track and road races from 5km to 24-hour endurance events. Always setting new targets for himself, at the 2019 London Marathon his goal is to be in the top-three USA-based runners in his age group. At the same time he is “delighted to be able to help raise the profile of Laura’s extraordinary new charity, which has immediately hit the ground running in helping those like her who are suffering with this hugely-debilitating illness.”

There are so many ways you can contribute to helping John cross the finishing lines - whether that’s through sponsoring/donating or why not help us by organising a fundraising event?

So please support Mind Body EDS on our Marathon journey by visiting our Virgin Money Giving page (https://uk.virginmoneygiving.com/john-thompson-MindBodyEDS), certain in the knowledge that your generous donation will change the lives of those suffering from this crippling and potentially fatal condition.

Follow John’s training for the London Marathon by visiting his Facebook page where he will be posting regular updates: @JohnThompsonLondonMarathon2019MBEDS

If you have a place in the London Marathon this year, why not give yourself a stronger purpose to run whilst making a real positive impression on the lives of those suffering with Ehlers-Danlos syndromes by choosing to fundraise for Mind Body EDS. We are welcoming all those with London Marathon 2019 ballot places to run for us, so please get in touch with us here.

#MindBodyEDS #AGatewayofHope #LondonMarathon #ThanksaBillion

GIVING SOMETHING BACK: Mind Body EDS in Farnham Waitrose Community Matters

Mind Body EDS has successfully been accepted to be apart of Waitrose Community Matters in the Farnham branch for December 2018. At the end of your shop in the Farnham branch, you’ll receive a token to place in a box of the good cause you’d most like to support. The more tokens a cause gets, the bigger the donation they receive. Every month, this branch donates £1000 to be shared by three local causes. So spread the word and donate your green tokens to Mind Body EDS!

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New Charity awards first grants to individual EDS sufferers

The press release accompanying the awarding of first grants to individual EDS sufferers can be found here.

NOTES TO EDITORS

About Mind Body EDS

Mind Body EDS is a new charity aimed at raising awareness amongst the public and medical community about the range of Ehlers-Danlos syndromes. Its goals include providing financial support to individuals and families to enable effective early diagnosis and treatment, as well as towards EDS research. EDS is a group of genetic conditions affecting the body’s connective tissue resulting from collagen defects. Collagen essentially acts as a ‘glue’ keeping the body from falling apart and is responsible for supporting the skin, tendons, muscles, ligaments, blood vessels, bones, eyes and vital organs and therefore affects the entire body. Common symptoms are: dislocations/subluxations of joints, chronic pain and fatigue, easy bruising, aortic and/or organ ruptures, palpitations, digestive disorders and other comorbidities. For more information, please visit the website at www.mindbodyeds.org.uk

About the Mind Body EDS ‘Thumbprint’

The choice of the ‘thumbprint’ logo emphasises the fact that no two patients with EDS are the same. Just as the process of diagnosis, treatment and management is always different, so the thumbprint representing each individual’s EDS journey is similarly unique.

The black and white impression of a thumbprint also symbolically represents the stripes of a zebra. In medical school doctors are taught that, “when you hear the sound of hooves, think horses, not zebras” - in other words, assume that the simplest and most common diagnosis is likely to be correct (the ‘horse’) and avoid misdiagnosing for rare illnesses (the ‘zebra’). Unfortunately, EDS sufferers can go years, even decades, without proper diagnosis, as many in the medical community forget that ‘zebras’, whilst less common, do exist. And, just as no two zebras have identical stripes, so no two thumbprints are the same.          

With its ‘thumbprint’, Mind Body EDS aims to leave its mark and make a positive impression on those affected by EDS, the medical community and broader society. 

About the Founder

Laura Sylvester, 25, lives in Tilford, Surrey. Her medical symptoms went unrecognised for more than a decade until 2014, when she was diagnosed as having Ehlers-Danlos syndrome (Hypermobility, hEDS), together with a number of other comorbidities. Over this period her condition had deteriorated substantially and, with no specialist treatment available in the UK, she had to go to the USA for urgent life-saving surgery.  Since then, Laura has undergone a total of six brain and spinal operations in less than two years.

 

Mind Body EDS joins #GIVINGTUESDAY movement

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Mind Body EDS has announced it is taking part in this year’s #GIVINGTUESDAY campaign. The campaign, which began in America, is an antidote to the mass consumerism of Black Friday and aims to get people thinking of others in the run up to Christmas. #GIVINGTUESDAY is a global day of giving happening on Tuesday 27th November 2019 that harnesses the collective power of individuals, communities and organisations to encourage charitable giving and celebrate generosity worldwide.

We need your help to share and spread the word! Here is your chance to make a real positive impression and difference to the lives of those affected by Ehlers-Danlos syndromes by making a donation or pledge to our charity #GiveToMindBodyEDS.

Find out more by visiting www.givingtuesday.org.uk